Patients facing life-or-death decision make voices heard

PUBLISHED : Monday, 15 November, 2010, 12:00am
UPDATED : Monday, 15 November, 2010, 12:00am

Sufferers of terminal neuro-muscular diseases at some point in their treatment face the difficult decision of whether to undergo an ostomy, a procedure to aid breathing.

The surgery creates an opening in the respiratory tract to help patients who may be struggling to breathe as their muscles deteriorate.

The decision is a difficult one: patients opting against the surgery face the prospect of their lungs eventually shutting down, while life after the procedure involves constant support from a breathing machine.

For many, the latter choice is the only way to gain extra time with loved ones, a period in which extensive care and support for both patient and family is required.

Some of those facing this life-or-death choice, their families and volunteers staged a march with hospital beds outside the Legislative Council yesterday in an effort to raise awareness of their plight. They were urging the government to ensure them adequate assistance.

The cost per month of caring for each patient is about HK$14,000, according to the Hong Kong Neuro-Muscular Disease Association.

'The median household income in Hong Kong is around HK$18,000. Some patients choose not to do the surgery because they don't want to burden their families,' said former social welfare sector lawmaker Dr Fernando Cheung Chiu-hung.

For those who have the surgery, some are forced to stay in hospitals in the absence of able carers at home. 'Patients strive to live on so they can spend time with their families. Staying in hospital defeats the point of the surgery,' Cheung said.

Estimates put the cost of a patient staying in hospital at about HK$90,000 a month.

'If the government provides financial assistance to families so that patients don't have to stay in hospital, the expense would be greatly reduced,' said lawmaker Cyd Ho Sau-lan, who said she would be raising the issue in a forthcoming Legco discussion on the budget.

Patients living at home also face difficulties. H. W. Tse's 65-year-old father has motor neurone disease. The disease affects his brain's muscle control centre, and has left him paralysed. 'He can't even press an emergency button if he needs help,' Tse said.

Tse and her mother have had to take turns looking after her father 24 hours a day. One of them has to be there at all times in case the tube on his breathing machine loosens, which would be dangerous.

The three of them are living on Tse's income of about HK$10,000 a month. They are not eligible to apply for any assistance other than disability allowance.

'We're already under a lot of pressure having to care for my father. He can never recover and we don't know how fast his health will deteriorate. We hope the government can help us, at least financially,' Tse said.